Thursday, March 21, 2013

CALGARY – Dominic Boivin's black and brown paisley school backpack sits empty in a corner of his bedroom, near the computer chair where the Calgary teen used to play his Xbox.

It's the same backpack his parents watched a police officer carry up their driveway one night last June. Behind the police officer, Dominic's body lay in a medical examiner's van. A citywide search for him was over.

On June 6, 2012, Dominic "the Dominator" Boivin — a once-gifted soccer player and honour student with a lopsided grin and a gentle soul — took his life after four years of struggling against constant, mysterious, body-wide pain.

At its worst, the pain was so severe Dominic could not walk or eat, and could barely speak. His parents fed him liquids through a child's sippy cup.

At its best, the pain was partially blunted by aggressive therapy and a host of drugs ranging from anticonvulsants to antidepressants. One of those drugs would later provide his ultimate escape.

In the end, 18-year-old Dominic Boivin's suicide is a story of a teenager adrift in the medical system, who had lost all faith and hope that doctors could make the hurting stop. It's a story of how day-in, day-out physical suffering consumed not just a young man, but an entire family.

In the weeks before his death, when the pain had begun hammering away with renewed ferocity, Dominic had wondered aloud whether it would be with him forever. He was also aware of the toll his suffering was taking on his family, says his mother, Nathalie Bellavance.

On May 25, Dominic addressed an advisory committee for a school-based, province-wide community mental health program. He had been asked to speak about how someone copes mentally with pain that never ends. He described the months when his body was a virtual prison of pain. His jaw was locked; he could barely move. He spoke about how the only thing that kept him alive — "kept me surviving, kept me breathing, kept me thinking positive" — was his mind.

"It was at that point that I realized how powerful the mind was, how powerful my own mind was," Dominic says in a video shot that day.

Twelve days later, Dominic took his life.

*****

Chronic pain in children is not unknown. Between five and eight per cent of children and youths have unrelenting or recurrent pain so severe it affects their ability to go to school, sleep or function. Often the source is a mystery.

For them, research shows that the transition from child to adult care can be an extraordinarily vulnerable time if there is no co-ordinated care, says Dr. Jennifer Stinson, a nurse practitioner at the chronic pain program at Toronto's Hospital for Sick Children. Yet few programs have formal transition plans. The waits for adult pain clinics can stretch two or three years. Stinson says youths can feel as if they're in limbo. Many struggle with the side effects of drugs that cause mood and personality changes. Many aren't believed, or their symptoms are downplayed, she said. Chronic pain is something older people get, this misguided thinking goes.

Yet Dominic is not alone. It's rare, says Stinson, but she is aware of other young people who have attempted suicide because of persistent pain.

***

Brown-haired, blue-eyed Dominic Boivin was a "physical tornado" from the moment he was born on April 10, 1994. By 16 months, he was climbing out of his crib. He refused to crawl backward down the stairs on his belly. Instead, he went feet first. His first word was "tomber" – French for "fall."

He began playing soccer at age five. He was a cannonball on the soccer field, so tough his father, Jean Boivin, worried constantly that Dominic would injure himself or another player. His coaches and the parents of his teammates nicknamed him "the Dominator."

Then, at the start of Grade 8, in 2007, Dominic began feeling pain in his right knee. Soon it spread to both knees. He started physiotherapy and massage, but the pain crept upward, into his hip flexors, his lower back, his shoulders and then his neck. "There's something wrong with my body," he told a doctor.

A rheumatologist ruled it arthritis of the ligaments and tendons. But an anti-inflammatory drug couldn't blunt the burning and stinging, nor could high doses of the powerful steroid prednisone. Next, the diagnosis was fibromyalgia, a label often used when doctors can find no other explanation for pain. Desperate, the family tried acupuncture, biofeedback and nutritional supplements.

Then, in the summer of 2009, Dominic's jaw began to hurt. Within weeks, his jaw and mouth became stuck open. Nathalie, a teacher, had to take time off work to look after him, feeding her son smoothies and liquid meal replacements, tilting his head back to keep the fluids from spilling down his chin.

Dominic's body felt as if it were on fire. "Some days, all I would do is lie in bed and wait for my entire body to stop burning, but it never did," he once wrote in a brief autobiography. "I was officially a vegetable. " It was then, he wrote, that he finally realized "how much pain it took to bring a man to his knees."

His older sister, Marie-Pier, remembers watching her brother as he sat immobilized in front of the TV and thinking, " 'Oh my God, what is happening to him. What the hell is going on?'

"He couldn't talk and his mouth was kind of open … It was like the pain was internal and he wanted to scream and shout and tell us how much pain he was in, but he couldn't. It was like it was all locked inside him."

His weight dropping, Dominic was finally admitted to hospital.

"When I first met him he couldn't speak, he couldn't move and he was mostly in a bed or in a wheelchair," said Dr. Jorge Pinzon, a pediatrician at Alberta Children's Hospital and consultant to the hospital's pediatric complex pain clinic.

Testing ruled out underlying physical causes, such as a brain tumor, MS, stroke or lupus. Pinzon said that, after discussing the case with the specialists involved, doctors felt it was possible that Dominic was struggling with a complex pain condition as well as "conversion-type disorder." The theory is that the physical symptoms are subconsciously being caused by some underlying emotional trauma or psychological distress, without the person being aware of what is happening to him or her.

But a psychiatrist who specializes in fibromyalgia concluded in a written assessment of Dominic that there was nothing in his history to suggest to her that the start of his pain coincided with any "psychosocial stressor."

*****

Gradually, with physiotherapy and other exercises and support offered by the children's hospital pain team, the worst pain began retreating. In late summer, 2010, when Dominic was 16, his care was transferred to an adult pain clinic. "He was walking, he was talking, he was having a regular life, he was in a relationship," Pinzon recalls. Doctors felt the expertise of the adult hospital "may bring some relief to (Dominic) and the family," Pinzon said.

Dominic indeed had shown improvements in his mobility and other symptoms. "We made the connection (with the adult hospital)," Pinzon said. The family doctor was contacted as well to make sure Dominic was being followed, Pinzon said. "When he left our pediatric system, he was functional but still having difficulty with chronic, unexplained complex pain."

It took six months for Dominic to get into the first orientation session at the adult hospital, and another six months before the medical team saw him. While he waited to see the doctors, Dominic attended sessions on how to self-manage pain, set goals and exercise. But meanwhile, his pain wasn't abating. His psychiatrist started him on clonazepam, a muscle relaxant. He would later be warned that, in high doses, clonazepam could stop his breathing.

When Dominic met with the medical team in August 2011, he told the doctors marijuana was the only thing that seemed to be helping, the family says. By then, he had a federal licence to possess it for his pain. The doctors agreed to support his use of pot if he reduced his other medications.

Nathalie says that Dominic met with the medical team only once, and then with a psychologist. Six months later, his care was transferred back to his family doctor. "They said, 'if you need help, phone us,' " Nathalie said. "(The family doctor) told Dom, 'stay positive, do your physio.' But what more could she do?"

Doctors at the pain clinic told Postmedia News that it would be inappropriate to comment on a particular patient's care.

But Dr. Chris Spanswick, medical leader of the Calgary Pain Program, said systems are in place to identify patients who need to be seen by the medical team sooner, and that once patients complete the program, "we don't so much as discharge them, we share their care with family doctors, and if the family docs have a problem they can pick up the phone and say, 'What do I do?' "

"No system is perfect," Spanwsick said. "But I guess what I want to get across to you is (that) we do take this very seriously." He said links are being strengthened with the children's service so that children are followed regularly "until we can get them physically into a part of our program."

The clinic's current wait list contains 1,700 names.

Under his family doctor's direction, Dominic started tapering the clonazepam. Slowly the pain increased. He was studying hard to keep up with the few courses he was taking online or in class, but his short-term memory was shot, a side effect of his drugs. "I can't remember anything," he told one of his teachers, Anne Payne. On the days the pain was really strong, Dominic "would just shut down," Payne recalled. It was in the way he moved, she says, the way he struggled to sit down and get up. "He moved like he was 88 years old."

Gradually, even the marijuana stopped working. Most nights, he barely slept. Most days, he stayed home from school. Still, Dominic tried to stay positive, his parents said.

Then he felt the pain in his jaw returning.

****

In medical school, doctors are taught to diagnose and to treat. "We don't know very well how to deal with things that we don't understand," says Jocelyne McKenna, an Ottawa anesthesiologist who is Dominic's aunt.

"The biggest sadness that I have for Dominic is that when he was admitted to hospital, when he was very, very incapacitated and could hardly speak and feed himself, the intensive therapy he got helped him, and he got better.

"But there was only so much of that available to him."

Dominic's closest friend, Alain Mutambala, said pain changed Dominic; it made him more compassionate and sensitive to the suffering of others. The two friends spoke about suicide once. "He told me there were times he thought of it, and he asked me if I ever thought of it," Alain said. But they never discussed it again.

On Nov. 30, 2011, Dominic wrote: "Personally, I am extremely fortunate to this day that my name isn't engraved on a tombstone in a cemetery."

****

By the end of May 2012, the pain had taken a new hold. Nathalie stayed home from school for three days.

They saw his family doctor. "She talked to him for an hour," Nathalie recalls. "She asked, 'How are you Dom? How are you mentally? Do you have any black thoughts?' " She detected nothing.

Days before Dominc died, Marie-Pier remembers, her brother suddenly told her, "Marie-Pier, you know I love you, right?" He told her he needed a hug. She wonders now if he was preparing for death.

"I remember all those times when I was in a rush to do something else, and he would wake me in the morning and say, 'Marie-Pier, can you please help me put my socks on?'

"It was such a futile part of my day and it was so frustrating that my brother had to ask for that, it was so humiliating for him."

The Friday night before he died was his high school prom at Ecole Sainte-Marguerite-Bourgeoys. Dominic, who wasn't graduating because he had fallen so far behind, stayed home.

On Sunday night, Nathalie bent and looked into her son's eyes as he sat in his computer chair, ramrod straight because of the pain, playing his Xbox. She stroked his hair and told him that she would stay home the next day if he needed her to.

Dominic reassured her that he would be okay by himself.

On Tuesday, Dominic took a taxi to his physiotherapy appointment, returning home sometime around 3 p.m. He wrote "physio tomorrow 2:45 pm!" on a note and left it on the kitchen counter. Then he took the near-full bottle of clonazepam from a kitchen shelf, as well as a bottle of vodka. He wore dark blue sweatpants and a royal blue Nike hoodie, and carried his backpack. He left his wallet and cellphone behind.

When Nathalie returned home from school shortly after 4 p.m., she called out to her son. There was no answer.

At 11 p.m. that night, a violent thunderstorm hit. Jean drove for hours, searching for his son, until his car stalled in a flooded street. He got out and ran across a field through pounding rain and lightning. "Where's my son?" he remembers thinking, his panic rising. "Oh my God, where is he?"

On Dominic's computer, Nathalie had found a list of websites on how to commit suicide with clonazepam and alcohol.

Alain Mutambala remembers sitting in a car the next day with a friend, wondering where to look for Dominic. Alain had tried to reach Dominic the week before, but Dominic wouldn't answer his calls or text messages. Suddenly, sitting in the car, Alain said he felt Dominic's presence. "I could feel his energy, it was like he was in front of me, it was like he was smiling at me … I had a very strong feeling that it was him saying, 'everything is OK now.' "

Dominic's body was discovered some time around 6 p.m. that day, June 6. He had driven his sister's car to a small condominium development on a crescent only 200 metres from his home, parking in a spot hidden from the curb by a tree.

Nathalie remembers hearing sirens. Then, at 7:15 p.m., she and Jean watched through the living room window as the police car and van pulled up. The police had Dominic's backpack. They carried his ring and silver cross necklace in a small plastic bag.

Emotionally, "we just lost it," Jean said. "They tried to calm us down but there was no way of calming us down."

Nathalie pleaded with the police to let her see her son's body. They blocked the door. "You don't know how sick he was," she cried. "Is he at peace? Does he look like he's in peace?"

They did see their son one last time – three days later, in the mortuary in a cedar cremation casket. Dominic was dressed in a favourite white shirt and sweat pants. They had dressed their son in death the way he dressed in life, always in sweat pants and never jeans, because it hurt his hips too much to wear jeans.

The grieving parents blame no one. But they say the transition between child and adult care was too long, and that not enough was done to help Dominic get the social or peer support needed to keep him from feeling so isolated and alone. "Why did he take his life? I think there was no hope anymore of getting better," Nathalie says. "I think his first goal was to get rid of the pain. He said, "I cannot do this anymore.' "

Experts in the field say chronic pain in youth cries out for better political and public awareness. What's needed, they say, is increased training for health-care providers in diagnosing and treating children's pain; increased funding to reduce waits, including mental-health services; more research into drugs to better control pain; better transition planning for youths moving to adult centres; and Internet-based programs to help link youths in pain to others for support.

"We don't judge his decision," Nathalie says, as Jean slips his hand over her own. "It's very hard, it's heart-breaking. We're never going to forget him … We're just hoping that we can help another person not make the same choice, and push the medical system to do something."

Their son left them with a story to tell, Jean says, "and a burden to lift off his spirit."

Factbox: Where to go for help

If you are in crisis, go immediately to your nearest emergency department or call 9-1-1.

Chronic pain patients who are treated by primary care providers will experience significant improvement in their symptoms if their physicians are trained in pain management, according to a new study published in the Clinical Journal of Pain.

The Primary Practice Physician Program for Chronic Pain (4PCP) helps doctors learn how to treat pain patients through educational classes taught by psychologists, occupational therapists, and physical therapists who specialize in pain management.

Even just a few hours of training provide "remarkable" benefits, with patients returning to work faster, and experiencing less pain, fatigue and depression. Physicians also reported more comfort in assessing and treating pain patients, and shorter visit times.

"We hope to avert chronic pain syndrome, and instead see improved return-to-work rates, fewer emergency room visits, and significantly improved emotional well-being in these patients," said Thomas C. Chelimsky, MD, professor and chairman of the department of neurology at the Medical College of Wisconsin. "From a physician perspective, we observed greater job satisfaction and more efficiency. Economically, the impact of 4PCP training could be significant as well in health care dollars saved."

Thirty-one primary care physicians participated in the pilot study, with about half having 4PCP training and the rest acting as a control group. Training was provided to the doctors through lectures, seminars, web-based information and personal interaction with the pain specialists.

Over one hundred patients being treated by the doctors also participated. The typical patient was a female in her 40's or 50's who suffered from back pain, fibromyalgia, arthritis or neck pain. Nearly all the patients used pain medicine and nearly a third had pain-related surgery. They had chronic pain for an average of 11 years.

"Patients with chronic pain experienced clinically significant benefit from this physician program including reduction in pain, fatigue, depression, and pain interference, resulting in improved function," said Chelimsky.

Doctors also reported greater satisfaction with how they were treating patients and more confidence in how they prescribed pain medications.

"For the physician, the return on investment is compelling, with time saved in visits and improved job satisfaction. 4PCP provides a promising framework for addressing recent calls to revamp approaches to chronic pain education and management," the study concluded.

The pilot study initially called for 16 hours of pain management training for physicians, but researchers found that just 10 hours a year was effective.

About 100 million Americans suffer from chronic pain, according to the Institute of Medicine, which has called for greatly expanded training for doctors in pain management. Fewer than 4,000 pain specialists are currently practicing in the U.S.

A recent survey of 117 medical schools by Johns Hopkins University found that most provided only a few core topics on pain; with cancer pain, pediatric pain and geriatric pain essentially ignored by most medical schools. Other studies have found that most primary care physicians feel "inadequately prepared" to counsel patients on pain.

Monday, March 18, 2013

To the list of differences between men and women, we can add one more: the drug-dose gender gap. Doctors and researchers increasingly understand that there can be striking variations in the way men and women respond to drugs, many of which are tested almost exclusively on males. Early this year, for instance, the Food and Drug Administration announced that it was cutting in half theprescribed dose of Ambien for women, who remained drowsy for longer than men after taking the drug.

Women have hormonal cycles, smaller organs, higher body fat composition — all of which are thought to play a role in how drugs affect our bodies. We also have basic differences in gene expression, which can make differences in the way we metabolize drugs. For example, men metabolize caffeine more quickly, while women metabolize certain antibiotics and anxiety medications more quickly. In some cases, drugs work less effectively depending on sex; women are less responsive to anesthesia and ibuprofen for instance. In other cases, women are at more risk for adverse — even lethal — side effects.

These differences are particularly important for the millions of women living with chronic pain. An estimated 25 percent of Americans experience chronic pain, and a disproportionate number of them are women. A review published in the Journal of Pain in 2009 found that women faced a substantially greater risk of developing pain conditions. They are twice as likely to have multiple sclerosis, two to three times more likely to develop rheumatoid arthritis and four times more likely to have chronic fatigue syndrome than men. As a whole, autoimmune diseases, which often include debilitating pain, strike women three times more frequently than men.

While hormonal, genetic and even environmental factors might influence the manifestation and progression of autoimmune diseases, we don't yet know the reason for this high prevalence in women.

Pain conditions are a particularly good example of the interplay between sex (our biological and chromosomal differences) and gender (the cultural roles and expectations attributed to a person). In 2011, the Institute of Medicine published a report on the public health impact of chronic pain, called "Relieving Pain in America." It found that not only did women appear to suffer more from pain, but that women's reports of pain were more likely to be dismissed.

This is a serious problem, because pain is subjective and self-reported, and diagnosis and treatment depend on the assumption that the person reporting symptoms is beyond doubt.

The oft-cited study "The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain" found that women were less likely to receive aggressive treatment when diagnosed, and were more likely to have their pain characterized as "emotional," "psychogenic" and therefore "not real."

Instead of appropriate care for physical pain, this can lead to treatment for mental health issues that might not even exist. The situation is further complicated by the fact that antidepressants are absorbed differently in women and vary in effectiveness, depending on hormonal cycles.

The routine attribution of abdominal pain from conditions like appendicitis or gastrointestinal disease to gynecological problems can also delay or complicate the diagnostic process. A 2008 study published in the journal Academic Emergency Medicine, designed to gauge gender disparities among emergency room patients complaining of abdominal pain, found that even after adjusting for race, class and triage assessment, women were still 13 to 25 percent less likely than men to receive high-strength "opioid" pain medication. Those who did get opioid pain relievers waited an average of 16 minutes longer to receive them.

Conditions like fibromyalgia or chronic fatigue syndrome, for which definitive causes have not been identified and concrete diagnostic tests are not available, illustrate the problems associated with the perceived reliability of the female patient as narrator of her pain. Women are more likely to receive diagnoses of many of these more nebulous conditions — fibromyalgia, which affects about six million patients in the United States, is nine times more likely to be diagnosed in women than in men — and this discrepancy surely contributes to the widespread skepticism that still exists over the legitimacy of these disorders.

I AM a sufferer of pain and chronic disease. Like many, I've had physical symptoms (in my case, respiratory problems and infections) explained away as emotional. My freshman year in college, I was in the emergency room, flanked by machines and struggling to breathe while doctors lobbed questions at me: Why wasn't I responding to the medication the way they expected I would? Was I just too anxious? Could I not handle stress, and was that making me sick?

I was 23 before I was given a correct diagnosis of a rare genetic lung disease called primary ciliary dyskinesia. I'd been sick since birth, but long diagnostic journeys are occupational hazards of living with conditions doctors don't often see. Still, my journey was unnecessarily protracted by my doctors' dismissal of my symptoms as those of a neurotic young woman.

For all the medical advances of the past few decades, we still know shockingly little about pain and how to control it. Sex-based research is a crucial part of understanding not just the underlying mechanisms of pain, but the most effective ways to treat it for men and women alike. The Institute of Medicine report found gaps in research, particularly in terms of effective treatments, as well as in the oversight of pain research. The report recommended that these problems be addressed and that strategies to resolve them be implemented by 2015.

Among those improvements must be a renewed focus on discovering why women respond differently to some drugs and diseases, as well as an emphasis on training physicians to better diagnose and manage women's pain. A report by the Campaign to End Chronic Pain in Women found that inadequate physician training in diagnosing and treating just six pain disorders that affect women either exclusively or predominantly, including fibromyalgia and chronic fatigue syndrome, added as much as $80 billion a year to America's health care bills.

Part of the reason the diagnosis and treatment of women's pain lag so much is simply the pace of medical research itself, which is slow to move from publication to clinical practice. Unfortunately, if anything, changes in assumptions about gender evolve even more slowly.

Laurie Edwards is the author of the forthcoming book "In the Kingdom of the Sick: A Social History of Chronic Illness in America" and a writing teacher at Northeastern University.

Saturday, March 16, 2013

Chronic pain caused by nerve damage may be far more common in children and young adults than previously thought, according to a new study at Massachusetts General Hospital. Their findings, which are being published in the journal Pediatrics,could lead to more accurate testing and diagnosis of children with widespread chronic pain.

In a small study of young patients with chronic, unexplained pain, researchers say tests found that most had small-fiber polyneuropathy, a condition rarely reported in children. They call this new syndrome juvenile-onset small-fiber polyneuropathy or JOSeFINE.

Small-fiber polyneuropathy (SFPN) in adults is most commonly associated with diabetes, although it can also be triggered by exposure to toxic chemicals. SFPN involves widespread damage to nerves that carry pain signals from the skin and also control bodily functions such as heart rate, blood pressure and sweating. Symptoms of SPFN include chronic pain in several parts of the body, often in the feet or lower legs, along with gastrointestinal problems, dizziness, fainting and a rapid heart rate.

To see how common the disorder is in children, researchers at Massachusetts General Hospital (MGH) reviewed the records of 41 young patients who were treated for persistent widespread pain that began before the age of 21. All of the patients had a battery of diagnostic tests, including several tests recommended for SFPN.

An analysis of the results found that 24 of the 41 patients met their criteria for a diagnosis of SFPN, meaning that at least one test indicated the presence of the disease. Of the remaining 17 patients, 16 were determined to possibly or probably have SFPN, based on abnormal test results. Sweat production – a sensitive diagnostic test for SFPN – was reduced in 82 percent of patients.

"We've found the beginnings of a way to better evaluate young patients with otherwise unexplained widespread body pain," said co-author Anne Louise Oaklander, MD, director of the Nerve Injury Unit in the MGH Department of Neurology. "By identifying the tests that are useful for diagnosing this condition, we hope to reduce the use of unnecessary, expensive, sometimes painful and potentially harmful testing that many of these children have undergone."

Oaklander says some families traveled thousands of miles to MGH with their sick children in a desperate search for answers to their chronic pain.

"Because everyone wanted to help these children, they had undergone myriad tests, two thirds had been hospitalized, and some had tried many medications, usually without benefit," she said.

Based on the study findings, Oaklander says doctors at MGH will now take a two-part approach to evaluating chronic pain in children. They'll first be evaluated by a neurologist for small-fiber neuropathy, and if that is confirmed, specific blood tests will be given to pinpoint the cause.

"It's important to consider this diagnosis, since there are treatments for many symptoms of neuropathy – including medications that increase blood pressure and improve gastrointestinal function – and for some of the underlying causes," Oaklander said.

Saturday, March 09, 2013

At 10 p.m. on a Friday night in a private room on the 14th Floor of NewYork-Presbyterian Hospital on 68th and York Avenue, my mother was lying in her bed hallucinating, in that dream space people go on their way to being gone.

She spoke of seeing trees, possibly a forest. And she mentioned to Nick, my stepfather, that she had been to the theater where her play was showing and that the audience was full. In reality, she had not left the hospital in a month, and the play, "Lucky Guy," was nearly a year away from opening.

My brother, Max, and I stood there in disbelief. Though it had been weeks since her blood count showed any sign of improvement, the gravity of the situation had crept up on us. Mom's housekeeper, Linda Diaz, who had worked for her for 25 years, was in the corner sobbing.

At some point, a team of doctors and nurses arrived to assess the situation, and Mom became slightly more lucid.

At this point, my mother looked annoyed, gave a roll of the eyes and refused to answer the question, which later on was the source of some debate between Max and me about whether her sarcasm and humor remained even as her memory and focus faded or whether she was simply irritated at being treated like an infant.

A few hours later, after falling asleep for a short time, she woke up, ate ice cream with Max and me and was able to talk with some coherence about Jerry Sandusky's conviction earlier that day.

When Max said, "Mom, I'm going to miss you so much," she said: "Miss me? Well, I'm not dead yet."

For most of the next three days, before she entered a coma and died, she was sort of herself, asking for the papers and doing the crossword. On Sunday, one of the nurses arrived to give her medication and innocently asked if she was planning on writing about what was happening to her. My mother simply said, "No."

I took this more or less at face value until after her death, as plans moved forward with her play "Lucky Guy," and it occurred to me that part of what she was trying to do by writing about someone else's death was to understand her own.

Illness, and how a person handles it, was not the first thing on my mom's mind when she began writing "Lucky Guy" back in 1999. At that point, she wasn't even sick.

Based on real events, "Lucky Guy" is about a tabloid journalist named Mike McAlary. In the early '90s, he became one of the highest-paid newspaper columnists in the country. Crime was still rampant in New York, and the Internet had not yet destroyed the economics of the newspaper business. My mother said that she saw his career as "the end of something," a bookend to a time when reporters could still believe there was power in the job; when Elaine's was still one of the city's most glamorous rooms; when much of Times Square still belonged to prostitutes and drug dealers; and when the West Village had not yet been taken over by hedge-fund magnates and Russian oligarchs.

My mother knew a lot about McAlary's world. She dreamed of being a newspaper reporter from the time she was in high school, and wound up spending much of her 20s working at The New York Post. Moreover, McAlary was what she liked to call "a problematic human being." And after a decade of writing and directing romantic comedies, a lead character who wasn't entirely likable seemed like a good way to keep herself from getting boxed in.

The project, however, kept getting sidelined. There was a movie, "Bewitched." And a play Off Broadway, "Love, Loss, and What I Wore," which she wrote with her sister Delia. Then another movie, as well as two anthologies of her essays. Another problem she kept running into: She'd conceived "Lucky Guy" (then called "Stories About McAlary") as a film for HBO, but the structure was unconventional, relying largely on the other characters to tell their versions of what happened to him, essentially breaking the fourth wall. And everyone, including her, was unsure of how it was going to work on-screen.

Then in 2008, Colin Callender, the man guiding the development of "Lucky Guy" at HBO, left the network. Callender had taken a personal interest in the project because he'd known McAlary. Shortly after striking out on his own as an independent producer, he called my mother with a new idea: What if her script was not a movie but a play, where characters regularly talk to the audience?

Two weeks later, she handed him a new draft. By this time, there was something else pulling her toward McAlary as well.

McAlary got the scoop of his life just nine months after receiving a diagnosis of advanced colon cancer. In 1997, he wrote the story of a Haitian immigrant named Abner Louima who was brutally assaulted by a New York City police officer. In the spring of 1998, McAlary won the Pulitzer Prize for his work. On Christmas of that same year, he died at 41. Shortly before his death, he was quoted as saying: "If you are a doctor or a lawyer, you take the case. If you're a reporter, you write the story. I didn't think about being sick."

When Mom returned to working on the script in 2008, this was something she knew all about, though it was a secret confined to a tiny group of people: my stepfather, my brother, her sisters, a couple of close friends and me.

In late 2005, my mother went to see her doctor because she had been feeling, as she later told me, "punky." She had always been a little anemic, but now, she appeared to be getting worse, with fevers and inexplicable infections. After years of seeing a trainer two to three times a week and being pretty fit for a woman in her mid-60s, she found herself dreading having to climb stairs.

She eventually made her way to J. Gregory Mears, a hematologist at Columbia University, who quickly gave her a diagnosis of myelodysplastic syndrome, an aggressive blood disorder that destroys the body's ability to make healthy blood cells and ward off infections. The only known cure for it is a stem-cell transplant, but stem-cell transplants are especially difficult in older patients. Among other potential complications, the body may reject the donor cells or develop graft-versus-host disease, in which the transplanted cells can attack the patient.

This is what happened to Susan Sontag, who also died of acute myeloid leukemia brought on by MDS, and had many of the same doctors as my mother. Discussing the aftermath of her unsuccessful transplant in an article for this magazine in 2005, Sontag's son, David Rieff, wrote, "To me 'torture' is not too strong or hyperbolic a word."

My mother had seen her closest friend, Judy Corman, go through a series of increasingly painful treatments that didn't do much but extend her suffering from the cancer that eventually killed her. Between watching this and reading about what happened to Sontag, Mom became unambiguous in her opposition to testing fate, to gambling away comfort for the remote possibility of being cured. She was determined to have a "good death."

I'm not sure what would have happened had a stem-cell transplant been a viable option ­ — if her sisters had been a match, for instance — but thankfully, it didn't come to that. Soon after my mother went to see Mears, Jerome Groopman, a doctor at Harvard with extensive experience in treating cancer, was called in for a second opinion. After running a series of tests, he concluded that she quite likely had an unusual variant of MDS, which could be treated with less drastic measures.

Over time, the worry I felt when she first told me about the disease began to fade. We knew the statistics, but statistics — as Alice McAlary recounted to Mom about her husband, Mike — get you only so far. Besides, my mother had never been ordinary.

A moderate dose of prednisone helped stabilize her blood count for a couple of years. When the prednisone stopped working, she went to see Stephen Nimer at Memorial Sloan-Kettering. He put her on Vidaza, a low-dose form of chemotherapy with few side effects. Along with monthly blood transfusions, it effectively controlled the disease for two years.

Then while on a trip in the South of France in 2010, she went swimming and felt something stab her arm. She believed she had been stung by a jellyfish but was not sure. A few weeks later, she wound up in a hospital in Los Angeles with an inexplicable bacterial infection that led to a bump on her arm the size of a tangerine. Miraculously, when she got out, she was transfusion-independent. Her doctors had no idea what had happened, except to speculate that her bone marrow responded to a threat in an unusually dramatic way and was now producing healthy blood cells and platelets. My mother was not one to go in for superstition or miracles — godlessness was for her a form of religion, a belief in self-sufficiency above all else — but she was near certain her recovery had something to do with the jellyfish.

At various points over the years, she considered coming clean to her friends and colleagues about her illness. But she knew the effect it could have on her career. Certainly, she could continue writing books and essays. But getting a movie made would be impossible, because no insurance company would sign off on it. Arguably, she could do a play, but bringing it to Broadway would be difficult, given that the development process takes years. Beyond that, what my mother didn't want was to have her illness define her, turning every conversation into a series of "how are you?"s.

All her life, she subscribed to the belief that "everything is copy," a phrase her mother, Phoebe, used to say. In fact, when Phoebe was on her deathbed, she told my mother, "Take notes." She did. What both of them believed was that writing has the power to turn the bad things that happen to you into art (although "art" was a word she hated). "When you slip on a banana peel, people laugh at you; but when you tell people you slipped on a banana peel, it's your laugh," she wrote in her anthology "I Feel Bad About My Neck." "So you become the hero rather than the victim of the joke."

And she applied that maxim everywhere. She wrote a magazine article about The New York Post and her former boss there, Dorothy Schiff ("It is a terrible newspaper. The reason it is, of course, is Dorothy Schiff"); her breasts ("If I had them I would have been a completely different person"); even getting fat injections in her lips ("I looked like a Ubangi, so I never did it again"). There was also an entire book and movie devoted to her divorce from my father. (But never mind that.)

The thing is, you can't really turn a fatal illness into a joke. It is almost the only disclosure that turns you into the victim rather than the hero of your story. For her, tragedy was a pit of clichés. So she stayed quiet, though clues were sprinkled through much of what she wrote during the six years she was sick.

They were there in "I Feel Bad About My Neck": "Death is a sniper. It strikes people you love, people you like, people you know, it's everywhere. You could be next. But then you turn out not to be. But then again you could be."

They were there in "I Remember Nothing": "The realization that I may have only a few good years remaining has hit me with real force, and I have done a lot of thinking as a result. I would like to have come up with something profound, but I haven't. I try to figure out what I really want to do every day, I try to say to myself, If this is one of the last days of my life, am I doing exactly what I want to be doing? I am low. My idea of a perfect day is a frozen custard from Shake Shack and a walk in the park. (Followed by a Lactaid)."

And they were there in her last edits of "Lucky Guy," the final piece of work she completed.

My mother didn't know Mike McAlary personally, but she was certainly familiar with his kind. And what details she didn't know were quickly filled in by his friends, colleagues and relatives, almost all of whom she interviewed.

McAlary was born in Oahu, Hawaii, and he grew up in Goffstown, N.H. After graduating from Syracuse University, he went to work at The Boston Herald American, covering sports, then eventually scored a job at New York Newsday. There, he made a name for himself as a particularly aggressive reporter, covering crime and police corruption. After that he began to bounce back and forth between The New York Daily News and The New York Post, getting bigger and better contracts each time he made a move.

In 1993, he broke his contract with The Daily News to become the highest paid reporter at The Post, with a salary of $945,750 over three years. The Daily News was granted a preliminary injunction that prevented him from making the move, and McAlary wound up with too much time on his hands. After a night out at a Yankees game, he totaled his car on the F.D.R. Drive. His injuries were so serious that he spent several days in a coma and a month in the hospital. Rupert Murdoch, who hired him at The Post, never called or came to see him. But Mort Zuckerman, who owned The News, did. So he stayed at The News.

Not long after McAlary returned to work, he made a career-killing mistake. A woman in Prospect Park had reported being raped, but Mc­Alary's sources had doubts. He was told that the results of the rape kit had come back negative for sperm, that it was only a matter of time before she was found out. But the most crucial points in McAlary's stories turned out to be wrong. The woman had been raped. What the source didn't realize was that no sperm didn't necessarily mean no semen. McAlary had made no attempt to speak with the victim herself, an act of laziness that his supporters believed was partially attributable to his accident.

The News reduced the frequency of his column. The official explanation was that he was writing his novel. It was around this time that he began to get sick. He was jaundiced and losing weight. In conversations, he seemed dazed.

"He still had these symptoms," said his widow, Alice, when I went to see her last month. "You have to remember, they put him all back together again. So when he started having issues with his colon, his stomach, all that stuff, we attributed them to the accident."

By the time McAlary got his diagnosis of colon cancer, it had already progressed to an advanced stage.

"It was a desperate situation," said Ed Hayes, one of McAlary's closest friends and the man who negotiated all of his contracts. "The nurse took one look and said: 'Forget this guy. He's a dead man. There's no hope for him.' "

Nevertheless, he underwent surgery to remove as much of the cancer as possible, then started chemotherapy in 1997. He was hooked up to the chemo drip when he received a tip that a man had been severely assaulted by a police officer. He drove from his treatment to see Abner Louima in the hospital. He was the first reporter to interview the victim. In horrifying detail, Louima told him how he'd been wrongfully arrested outside a nightclub and taken back to a police station, where one of the cops raped him with a plunger.

In a series of articles, he not only exposed a monstrous incident of police brutality but started the earliest debate about the Giuliani-era approach to law enforcement. In short order, McAlary's career was rehabilitated.

In the play my mother wrote, there's a scene toward the end, in which McAlary, sick with cancer, goes to the Poconos to visit his friend Jim Dwyer, then a columnist at The Daily News. It's a glorious summer day, and McAlary's 12-year-old son, Ryan, wants to do a flip off the diving board, but he gets scared and can't do it. So McAlary takes off his shirt, walks to the edge of the diving board and says to him: "When you do these things, you can't be nervous. If you think about what can go wrong, if you think about the belly flop, that's what'll happen."

And then McAlary does the flip himself and makes a perfect landing.

It's a metaphor, obviously, for his view about life. And I've come to think it might as well have been about my mother. The point is that you don't let fear invade your psyche. Because then you might as well be dead.

As she saw him, McAlary was a role model not so much in life, but in death, in the way that he used writing to maintain his sense of purpose and find release from his illness. In the six years my mother had MDS, she wrote 100 blog posts, two books and two plays and directed a movie. There was nothing she could do about her death but to keep going in the face of it. Work was its own kind of medicine, even if it could not save her when her MDS came roaring back.

"I'm having a little health crisis."

That's how she put it when she called me shortly before Memorial Day weekend.

I dropped everything, got into a cab and headed up to see her at NewYork-Presbyterian Hospital. While I was en route, the phone rang; it was Max, who told me that Mom's MDS had turned into leukemia. I think I already knew, even though I hadn't asked her for specifics. For six months, Mom's blasts — the bad guys that make it difficult for people with MDS and leukemia to produce healthy platelets and white blood cells — had been creeping back up, indicating that she was developing a resistance to her medication. Now she would need a brutal form of chemotherapy if she hoped to survive. Max and his girlfriend, Rachel, were getting on a plane from L.A.

When I arrived in her room, my mother was crying. She cried a lot that first night, and then, the next day, she cried some more because she was certain Christopher Hitchens had done no such thing, and she was devastated at the thought that she might not be as brave as him about death.

It terrified me to see her cry like that. She loved me, showered me with gifts, e-mailed or called every time I wrote something that made her proud. But even after all the weekly meals, the shared vacations, the conversations about movies and journalism and the debt ceiling and Edith Wharton, I still viewed her with a mix of awe and intimidation. It wasn't often that I caught a glimpse of her vulnerability.

Now there she was, in her Chanel flats and her cream-colored pants and her black-and-white-striped blouse, looking so pretty and so fragile as she dabbed her eyes with a Kleenex; and I finally understood what she meant when she said she was a bird — that she wasn't just talking about her looks but something inside as well.

As she explained it that first night, the odds of the chemo working were below 50 percent, and even if it did, it would probably not buy her more than a year and a half or so. "I want to live to be 100," she said. "I want to see how things turn out for you and Max." But she wasn't sure the chemo was worth doing for such a limited upside.

I told her that I hoped she would reconsider, that a year and a half is a lot of time during which something else may emerge as a viable treatment. Still, I said I would respect whatever she wished to do, that it was her body, her life, her choice. I think this is what she needed to hear, that we wanted her to live more than anything but that she was still in control. Because within minutes, she seemed resigned to the idea that she was going to be nuked, as she put it.

Forty-eight hours later, she was hooked up to an IV. Her sadness seemed to lift, and her humor returned. The side effects of the chemo wouldn't kick in for at least a week, so she spent her days with Delia powering through a TV pilot they were writing for Scott Rudin. At night, Nick brought in Shake Shack or Cuban-Chinese, and we watched episodes of "Curb Your Enthusiasm." Binky Urban (Mom's book agent and one of her closest friends) and Ken Auletta (a writer for The New Yorker) were there frequently as well. So was Richard Cohen, the Washington Post columnist and one of her oldest friends. Because of my mother's tremendous sense of will and a modest dose of steroids, the script was finished before the chemo was.

At first, there were some encouraging signs. She wasn't in remission, but the blasts were below 20 percent, which is considered the threshold for being fully leukemic. Then, about a week and a half later, she got pneumonia. As her doctors explained it, the body often takes three weeks or so to begin producing neutrophils after chemotherapy of this type. And neutrophils are the good guys that defend the body from infections. One day, she would seem to be getting better; the next, worse. At night she was experiencing heart palpitations. It was confusing to all of us, including my mother.

So we waited.

We waited as she went on and off oxygen. We waited as her appetite left her. We waited as she lost her hair, and this I remember vividly, because I did not see her cry at all. Crying, I believe, is a sign that there's still hope. Instead, she seemed sort of numb.

My mother loved looking good. She had her hair blown out weekly. She wore makeup. She had a closet filled with Prada and Armani. When she realized that she might be too old to wear a very expensive dress by Azzedine Alaïa that she bought in Paris, it was like a little arrow to the heart.

She had fallen in love with and married a man who was as fastidious about presentation as she was. Even in the hospital, day after day, Nick arrived looking impeccable in his fancy slacks and his beautiful loafers, because getting dressed up was a way to say to her that things were still normal, that he hadn't lost hope. All sorts of men had rejected her when she was younger as cute but not beautiful. She wrote about it, turned it into a comic riff — everything is copy — but privately, it was heartbreaking for her until this noble man came along and made her feel that she was as fabulous to look at as she was to talk to.

And now, here she was without her hair, confined to a bed, using a nurse to help her go to the bathroom. It was the beginning of her losing her dignity. It was the beginning of a bad death.

In the days that followed, conversation became harder, and the silences grew longer. People who live thousands of miles from their parents often express regret at not being able to say goodbye, or about having spent too little time with them during their final days. But being there every day, as I was, produced its own kind of sorrow. It wasn't just the big things we were avoiding saying (although there were certainly some of those). It was the sadness of having run out of news to deliver, gossip to report, new books and movies to discuss. I actually believe that had Tom Cruise and Katie Holmes announced their separation a week earlier, we might have kept her smiling one more night.

On June 18, four weeks after my mother went into the hospital, the Public Theater held its annual benefit to raise money for Shakespeare in the Park. For more than a decade, my mother attended the gala every year, considering it the unofficial beginning of summer. Often it would start to rain in the middle of the show, and everyone would pull out their umbrellas and wait for it to pass. But it didn't matter. It was an evening when her favorite park in her favorite city turned into an enchanted forest.

The night before the benefit, my mother was able to get out of her hospital bed, but she couldn't really speak. She wrote down the names of all the people she had invited to sit at her table that year and organized the seating arrangement for me. When I got to Central Park the next evening, it was a mess: two of her guests had canceled; others knew she was in the hospital but not why; some appeared not to have been told anything at all and looked puzzled when I informed them that she and Nick weren't going to make it.

I was too discombobulated to ask a waiter to please remove the two empty chairs from the table. I just sat there helplessly, hands clasped underneath the table, trying to avoid the concerned looks of nearly a dozen people who suddenly knew that something was rotten in the state of Denmark but were too polite to say it.

After I got home, this admittedly trivial detail gnawed at me. How useless I was, how incompetent. I spent nearly 34 years at the foot of one of New York's best hostesses and I could not even figure out how to ask a waiter to take away two chairs. I had failed to pay adequate attention all those years, and could not even be trusted to do this one small thing for my mother as she neared the end.

Did she know she was dying that final week, that she was not ever going to leave the hospital?

Richard Cohen, who spent much of the final weeks in the hospital with us, says: "She knew. There wasn't a moment of confusion. I'm certain of that."

I go back and forth.

Absolutely, she planned for it. She redid her will earlier in the spring when her blood counts were going the wrong way, typed an exit letter on her computer, spelling out what she wanted after she died: a party in the apartment with Champagne and cucumber sandwiches from William Poll; a memorial held days after. "Get it over with" was the gist of her instructions. She even supplied the speaker list.

Nevertheless, as she ran out of time, she chose not to acknowledge, at least explicitly, what was happening to her. One of the last e-mails she sent went out five days before she died. It was addressed to her film agent, Bryan Lourd. "I am as sad as you can imagine to report that I have leukemia. Early reports are not particularly hopeful but not hopeless either."

The weekend before she went into a coma, Jerry Groopman called her from Boston. If she wanted to know, he was prepared to tell her that she had entered the terminal phase of her illness. She chose not to call him back.

And then there was that conversation with Max, the one in which she said, "I'm not dead yet."

In "I Feel Bad About My Neck," my mother wrote of turning 60: "Denial has been a way of life for me for many years. I actually believe in denial. It seemed to me that the only way to deal with a birthday of this sort was to do everything possible to push it from my mind."

Some part of me would like to believe this is what she was doing at the end as well, because it would indicate that her hope remained as she left the world. But it's just as likely that she felt too sad to have this conversation with me. Or that I was too sad to have it with her.

Sunday, June 24, was a pretty good day. The sun was shining, and Mom spent most of the afternoon on a couch in the front of her room, doing the crossword puzzle with Max. Binky was there, as was Richard Cohen and his companion, Mona. Amy stopped by with her husband, Alan. "We're going to the Guggenheim," Amy said. "Do you want anything from the outside world?"

"Sure," my mother said. "A de Kooning."

Another thing she requested was a pineapple milkshake, so Max brought one from Emack and Bolio's, made from fresh pineapple. But as far as my mother was concerned, a milkshake is one thing that's actually better with crushed pineapple. Dole.

"When I get out of the hospital, I'm going to go home and I'm going to make a pineapple milkshake with crushed pineapple, pineapple juice and vanilla ice cream, and I'm going to drink it and I'm going to die," she said, savoring the last word. "It's going to be great."

On this day, I told her some things. After she moved to her bed, I said that sometimes, I thought of the possibility of her not being around and wondered if I'd ever be able to write again. If I'd even want to. And she told me that I would, that I would find it within me, and that whatever happened, she hoped my brother and I would lead the kind of lives where we did stuff big enough to occasionally say, "Wow, I wish Mom was around for this."

We stared out at the 59th Street Bridge and tried to remember all the others that connect Manhattan to the rest of the world. The Brooklyn Bridge. The Williamsburg Bridge, the Queensboro Bridge, the Triboro Bridge. We got about halfway before she began to doze off.

On Monday, Nick called to say she'd had another tough night. I got to the hospital, and there was more blood work, none of it good. The blasts were everywhere. She didn't have a single neutrophil.

Hours later, she began to drift in and out of consciousness. We took turns holding her hand. Delia would come, then Max, then me, then Amy, then Binky, then Richard. Nick sat beside her and wept.

"In, out, in, out," she said, waving her hands at the windows. Also: "This is it," which she said in a tone that seemed to be half-question, half-declaration. It occurred to me later that it might have been the first uncertain moment she'd had in her entire life.

I started calling her friends to explain what was going on, that she was shutting down, that we were sorry for not having told them sooner. They were startled and confused, but gracious.

I told several of them that they would be speaking at her memorial, that she actually requested it in writing and that she'd also requested that they try to keep it to under five minutes.

Over and over again, they said to me, "This must be so hard for you." But making those calls wasn't. It was strangely beautiful. The people I called told me stories about great advice she'd given them; e-mails she'd sent that they'd loved; and occasionally, what a total pain she could be. Those were funny to hear. They were real.

While I did phone duty, Max relaxed and took off his button-down shirt. Two sleeves of tattoos ran down his arms. Mom had seen one of them years before and had not reacted favorably, so when he went in to get the other arm done, he decided that she would never see it. Never again did he wear a short-sleeve shirt in her presence.

"Wow, Max, look at those tattoos," Binky said.

"Shh!" he said, flashing her a smile.

My mother's eyes popped open.

"Mom, I'm so sorry about my tattoos."

"You. Aren't. Really," she said, her eyebrows raised in a kind of resigned indignation. And then she fell back asleep.

Jacob Bernstein is a frequent contributor to The New York Times, where he writes regularly for the Styles section.